Save Babies Through Screening Foundation UK, A Resource on Newborn Screening

Patron Jason Manford       

 

Contacting your MP

You may feel that you would like to write to your MP, MSP (Member of Scottish Parliament) or MEP (Member of the European Parliament) about the extension of the Newborn Screening programme in the UK.

 

There is no doubt that the families of children affected and members of the public can make a real difference in raising the profile of newborn screening and the need to extend the Newborn Screening programme in the UK, by writing personally to their MP.  It is always advisable to write to your own Constituency MP.  With that in mind, there are several points to remember when writing a letter.

Tips on Writing Letters About Newborn Screening Issues

  • If you have a child with a disorder that could have been detected and treated earlier through newborn screening, include a photo of your child
  • Identify your child by name
  • Include your personal story
  • Identify yourself as an ordinary member of the public, a family member, a health professional or an advocate
  • Include a return address on the letter
  • Personalise the letter to show your depth of concern
  • Be positive and respectful. One of the largest mistakes a family can make in dealing with professionals is to appear to be attacking the person
  • Be clear, stating exactly what is wanted from your MP
  • Ask for a written response that states their position on the issue
  • Thank them for his/her time on the issue
  • Try and keep the letter to one page if possible
  • Show that you are familiar and knowledgeable on the subject
  • If necessary, you can email patroberts@savebabiesuk.org for help with your letter
  • Send a copy of the letter to the appropriate organisations involved in the issue
  • Send a 'thank you' when you receive a response
  • Encourage your friends and families to send letters too

Other websites containing helpful information on contacting your MP

Latest news

 

09/12/2011: Pat Roberts features in The Yorkshire Evening Post [here]

27/11/2011: The Save Babies UK Annual Report for 2010/11 is now available to view [here]

25/11/2011: Our Autumn newsletter is out now! You can download it by clicking [here]

21/08/2011: Please support 12 year old Seth Morris in his fight for Newborn Screening. Click for more...

09/04/2011: The new PANS (Patient Advocates For Newborn Screening) website is now live...  PANS

 

 COMING UP...

 

Rare Disease Day, 29 February 2012

 

 Saving of Lives Through Newborn Screening Celebratory Event,  Westminster 25th April 2012

[more info]

 

Newborn Screening Awareness Week, 2-8 September 2012

 

[previous news stories]

  

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